I can't escape!

People call them many things. Locust, cicada, harvest fly, tibicen pruinosa. Whatever you call them, most people agree, those obnoxiously loud bugs are annoying.

You know, those insects most commonly referred to as cicadas that start "singing" their extremely loud chorus in the summer evenings. Yeah, THAT's what my tinnitus sounds like in BOTH ears, usually accompanied with other various noises including humming, ringing and fax machine sounds. AHHHH! It can drive a person mad.

But, tonight I went outside and I actually felt some relief because those super loud cicadas were sort of drowning out my tinnitus. I sat outside and felt like for once, I wasn't the only one being tortured by the noise. EVERYONE could hear it. The only difference was, everyone else could escape the torture at any time by going indoors or waiting until morning for the cicadas to settle down. I on the other hand, can't escape it. It's constant. 24/7. ALL THE TIME. Luckily, it does fluctuate in intensity...but I'm not sure that's really any consolation. Sometimes it's not as loud. But when it's loud....it's SUPER loud. So loud that I have trouble sleeping, I can't think straight, or hear anything. That's how it is right now. That's how it is A LOT.

So, while it may FEEL like a bit of relief to go outside and listen to the cicadas do their thing, I'd much rather be able to go outside and JUST hear the birds sing, the thunder crash or the tree leaves blow.

Much Love,
Shanon

Well, that didn't last long

So, it was just a few days ago that I was so excited that the prednisone was working and my hearing was a lot better. Well, like the title of this post says, it didn't last long. I think I had 2-3 days of better hearing and then it went back to crappy hearing. Oh well, no big surprise. That's the way it usually goes whenever I do a round of prednisone. But the really crappy part about it is that I've been having more dizzy episodes now. So, not only am I back to being deaf I'm more wobbly. No major vertigo attacks (knock on wood) lately but the whole "feeling like I'm constantly walking on a tightrope" is no fun. I hope things get better soon.

Anyways, on my "to do" list today is to schedule a check up appointment with my ear doctor and to find out where we're at with the support group. I know I could use a little support from fellow Meniere's sufferer's right now, and I'm sure some of you could too. "Hang in there!" That's what I keep telling myself! :)

Much Love,
Shanon

Commenting

So this will be short and sweet as last night I went to bed dizzy and then this morning I woke up still a little wobbly and I'm still trying to recover.

But, I wanted to talk about the blog in general and the commenting feature at the end of each post. I've had several people lately let me know that they are having trouble leaving comments. I've been looking into it and I'm not able to figure out what the problem could be. I do know you have to have a registered account with google or one of the other various options but other than that there shouldn't be a problem. Can some of you who have had trouble contact me here (under email/contact) and let me know specifically why you can't comment? What error message is it giving you? Also, anyone who had trouble leaving comments but figured it out can you go ahead and leave a message below letting us know what the trick is? :)

Thanks everyone, I really appreciate it! I want this blog to be a helpful tool for everyone and the best way to make that happen is to be sure everyone is able to interact.

Much Love,
Shanon

Thank You Friend

Over the past several years as I've battled in and out of hearing loss I've started learning a bit of sign language here and there. I've taken a couple of classes, watched tutorials and even bought a book or two on how to sign. But I've never stuck with it because, well honestly I've never needed to. While my hearing has been bad in the past, usually within days it comes right back up to a functioning level again. But lately, over the past several months I go much longer without being able to hear and the hearing loss attacks happen much more often than they used to. Honestly, over the past 6 months to a year I'd say I could say that there is a decent chance that I've had more bad hearing days than good, making me wonder, "Do I need to learn sign language?".

I talked to my hubby about it and he agreed that it might be good for both of us to learn how to sign for my bad days. So we started searching for classes and books and tutorials online. We even asked around for help and my dear friend Bailey came to our rescue. She quickly set up a dinner meeting to get us in touch with a couple of gals who know sign language. We met last night and it was a great evening full of support and generosity from people I just met, willing to help me in any way that they could. We talked about different options including hearing aids (which I've tried twice without luck), cochlear implants (which aren't an option right now) and of course learning sign language. We decided that at this point in time that Jeff and I just need to learn the basics to get us through the bad days, or weeks of hearing loss. We don't need to worry about proper grammar and all the rules that go along with signing. We just need a way for us to communicate without me being totally lost in the conversation and Jeff having a massive headache from talking so loud. So the plan is to take a free local sign language class that was suggested to us last night, and to continue teaching ourselves through videos and books. At this point we don't need to know a lot but it will be helpful to know the basics for now. Eventually I would LOVE to learn more so I can teach art classes to kids who are hearing impaired. Who knows.... maybe it will happen some day.




A BIG thank you to my friend Bailey for setting up our meeting and for just taking such good care of me. She is such a great friend. And of course thank you so much to Nancy and Sarah for meeting with me and for all your suggestions and support. I'm truly grateful for their kindness.

Much Love,
Shanon

ANOTHER round of Prednisone

Here we go again. After several weeks of MAJOR hearing loss I decided to do another round of the Prednisone steroid in hopes to reduce the inflammation in my ears and bring my hearing back up to a "good level" (for me anyways). I've taken this drug several times for this reason but unfortunately it doesn't always work, and what's even more unfortunate is that there are several short and long term side effects that can go along with taking prednisone, so I don't always like to take it to say the least. This time is no different.

As I've mentioned before I keep a daily log of my bi-lateral Meniere's symptoms. Looking back through my records I'm showing that this round of major hearing loss has been at its worse levels since about July 11th. That's OVER 3 weeks of being nearly deaf. And when I say nearly deaf I mean NEARLY DEAF. That's not being able to hear in person conversations AT ALL. I've been relying on reading lips and having people YELL at me so I can piece conversations together. Even that doesn't always work when my hearing is this bad, so out of frustration I usually just smile and nod and hope that I'm not offending anyone with my reaction... or lack there of. When my hearing loss is as bad as it's been I can't talk on the phone or watch T.V. or listen to music. Basically, I have to do a lot of things by myself...which can obviously become very lonely. So out of loneliness and pure desperation I decided to do another round of prednisone.

I started on August 4th with 30 mg a day for 3 days. Now I'm on 20 mg a day for 3 days and I'll continue tapering down from there. When I started taking it I immediately noticed my hearing getting better within that day! But the problem is those dreaded side effects I mentioned. While my hearing was getting better I also started having more dizziness. Luckily it hasn't been too bad as far as vertigo goes and it's been happening right before bed so I can just fall asleep and usually wake up fine the next day. My other problem with taking prednisone is how it effects my digestion. Trying to not get to detailed here, but I get stomach aches and other long term digestive problems from this medication. Not to mention other risks involved, such as osteoporosis, glaucoma and diabetes just to name a few. What's a person with bi-lateral meniere's disease to do? All these complications sure makes it difficult to decide on a treatment. And what's worse is that after 4 days of taking the meds, and with 4 days of better hearing, I'm now on day 5 and my hearing has dropped again! :( Frustrating to say the least. While I feel so grateful to have 4 days of decent hearing with the ability to have a conversation with my husband, talk to my friends, watch a movie and go to church. I'm back to a bad hearing day. Again I ask, what's a person with bi-lateral Meniere's to do? I guess all I can hope for now is that the prednisone kicks in again. My spirits could really use a few more good hearing days.

Much Love,
Shanon

P.S. Have you taken prednisone for your hearing loss? What kind of results did you have?